We try really hard not to let our altered life hold us back from enjoying what is also a very rich and beautiful life. But, I cant deny that we often face some challenges along the way.

In my ‘adventures of an altered life’ series I aim to share with you the ordinary fun of an extraordinary journey. This will include accounts of  our days out, holidays away and general life in the fast lane.

I’ll also be sharing the difficulty in making huge decisions for Harry and his future face and life as well as the results of those decisions – often hilarious and heart warming, always nerve wrecking and full of never ending hope.

Great to have you with us to share these adventures. Buckle up, it can be a bumpy ride!

SEND parenting; needing what we don’t want

SEND parenting; needing what we don’t want

I had planned the lives of my twins before they even arrived. Not in a control freak kind of way, but in an 'I'm taking for granted that my babies will be fine' kind of way and in honesty, I didn't realise I had done it until I was told it had been taken away from us...

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Sharing my 9 lessons from Kenya

Sharing my 9 lessons from Kenya

Recently, I was privileged to be invited out to Kenya as part of the press team with Sense International to see the work that they are doing in and around Nairobi with children who are deaf blind. I had few expectations before I went as I really had no idea what work...

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Why we will never be a ‘normal’ family

Why we will never be a ‘normal’ family

When my premature twins were born, we were told that twin 2, Harry, had been born with a rare craniofacial condition called Goldenhar syndrome. Before his third birthday he had also been diagnosed with autism. I didn't want to hear these diagnoses, I didn't want...

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Raising a child with autism – does it get easier?

Raising a child with autism – does it get easier?

Raising a child with autism, as with any additional need or disability, can be incredibly challenging at times. There have been moments as I have relayed some of our adventures to friends and colleagues that they have asked "do you think it will ever get easier as he...

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Dear NHS Staff

Dear NHS Staff

Never, in the history of the National Health Service in the UK, has it been under such practical and financial strain. People are living longer, the population is growing at a rapid rate with from within and from outside the country, funding has been restricted and...

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My child after diagnosis

My child after diagnosis

I was having my hair done recently and got chatting with another client. We were talking about our children and I explained that Harry is autistic. She told me that her friend's son had recently received a diagnosis of autism and that her friend was struggling to cope...

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7 tips for school transition when your child has SEND

7 tips for school transition when your child has SEND

Transition periods are always tricky regardless of who or what is involved but school transition comes with a whole host of extra emotions particularly when your child has additional needs and / or is unable to talk to you about their experience. I found myself in...

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Assisted living when your child has SEND

Assisted living when your child has SEND

I am in the process, thanks to a local grant and a hefty re-mortgage, of adding an extension to my house for Harry to have his own bedroom and wet room. This was always my intention from the day I bought the house because, back in 2012 when Harry was 7 years old, I...

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Autism and Sleep

Autism and Sleep

My son Harry has two diagnoses. His primary diagnosis is of Goldenhar Syndrome, a rare congenital craniofacial condition which affected the formation of his facial features. The second diagnosis is of Autism including Global Learning Delay. It is Harry's autism that...

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